Day 864 - A Week at Juju's! 🤸🏻‍♂️🛝🍲🎹🎸

Sunday, May 7th, 2023 - Saturday, May 13th, 2023

Mom and James spent the week at Juju's while Dad was at a Front Row Dads Retreat in Utah. James got to experience a lot of new things! We watched the Kentucky Derby 🐎 and try to get James on our childhood carousel horse. 🎠 He wouldn't have it! 👟 James is now very interested in tying and untying shoes so he practiced on Juju! 😂 He danced to Alanis Morissette during American Idol of course holding onto his guitar! 🎸 James was also introduced to a full size keyboard 🎹 he could put on his lap. He insisted on having his guitar, his ukulele, and this new keyboard at all times. Ideally he wanted everyone to have a musical instrument so we could jam out. Juju gave James his own harmonica so we are trying to add that to the mix as well!

James had a shopping spree at the St John's Town Center and is now the proud owner of a bunch of pajamas and cute outfits, thanks to Juju! 👕 He is like a 2T/3T on top (always depending on the brand) and like a 24 month on the bottom. 🩳 Once he starts gaining more weight though that should even out! He ate at a Greek restaurant and was very open to trying the Mediterranean flavors. 🇬🇷 He had fun at a new park in Riverside and loved swinging! James also experienced Seasons 52 for the second time and many of the staff were excited to see him again. He was also warmly welcomed at his second time at the bowling alley. 🎳 James wanted to support Juju and Aunt Robin for their award ceremony. He couldn't stop eating the banana pudding though! 🍌

A few of the toys that he plays with at Juju's he has learned to master, whereas a few months ago he played with them much differently. There is a toy that involves using a key to open each door and James has that down now! James also played with Play-Doh for the first time! 

Although James did eat a lot during the week unfortunately we had major issues with his GJ button. It was leaking horribly. Mom was considering taking James to Wolfson's for the IR team to do another replacement. But first Mom took pictures and posted it on a few Facebook groups for answers. The common answer was that they found when the GJ was leaking really bad for them it was because they had lost weight. Most of these answers were given by adults with GJs. Unfortunately this button is not very common. Our situation is a little different because we felt like there was not an issue before the most recent button change at St Joe's. But when we thought about it he did have a few days and hours of lower calories due to being NPO prior to decannulation, the button popping and being stuck in the ER for several hours, as well as not getting the button changed until the next day. James is fed continuously 800 calories a day if there is ever a break in that feeding schedule then he is dieting. So this may very well be the answer! We decided not to go to Wolfson's and to save that for another time. We would just need to make sure that we kept the gauze or G-tube pad dry. His skin was very irritated and it has looked the worse it has ever looked. 😥 

🤰🏻 Juju, Aunt Robin, and Aunt Taylor all helped Mom with her fertility injections during the week. It was physically impossible for Mom to do them herself and it was very important that they were done and the right place. Next week Mom will have another ultrasound. This week Mom has just been dealing with the fact that our expensive marketplace insurance has very limited coverage. Finding an OB has been so hard since supposedly everyone in the Tampa Bay area is pregnant at the same time. They won't see you until you're at least 8 weeks pregnant but they also won't see you if you are over 12 weeks pregnant. Most of them are booked and are not scheduling until August which means Mom would be a ways into the second trimester. After calling daily several offices Mom finally found one that had a cancellation and was able to get in earlier. If that cancellation didn't happen Mom would have had to resort to going to a Planned Parenthood for OB checkups which is absolutely ridiculous. That's too bad we pay an arm and a leg for Marketplace insurance that isn't taken at most doctor's offices. 🤞🏻🙏🏻✨ Thank you to everyone who has reached out. We appreciate your support! ❤️

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com